resources for persons with epilepsy in nyc
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Resources for Persons with Epilepsy in NYC. Lorna Myers, Ph.D. Co-director of Epilepsy Life Links www.epilepsylifelinks.com. What is Epilepsy Life Links?. A Northeast Regional Epilepsy Group Advocacy Branch - PowerPoint PPT PresentationTRANSCRIPT
Resources for Persons with Epilepsy in NYCLorna Myers, Ph.D.Co-director of Epilepsy Life Linkswww.epilepsylifelinks.com
What is Epilepsy Life Links?A Northeast Regional Epilepsy
Group Advocacy Branch
Our doctors realized that there were services that our patients needed and that were not being met by any other agency
The More You KnowKnowledge is Power!The more you know about
Epilepsy, the more prepared you will be to tackle it’s challenges, seek the best possible treatments, and understand options and services that may be available to you.
Education ProgramsEducational Programs for Patients and
caretakers◦These conferences are free and open to all◦Important updates in epilepsy treatment
and key topics in epilepsy by epilepsy experts
◦Introduction to wellness programs and local resources
◦2012: 14 educational conferences in NY, NJ, CT
◦Free educational events for nurses
Education Programs◦For a list of our upcoming events:◦http://www.epilepsylifelinks.com/eve
nts-news-epilepsy-new-york-new-jersey-connecticut.php
Educating the General Public The NEREG/Life Links team:
◦Nurse practitioners◦Epileptologists◦Neuropsychologists◦Psychologists ◦Epilepsy advocates
By invitation to schools (teachers, students)
Police and fire departments
Epilepsy in the SchoolOur nurses: Seizure recognition and
first aid training (by invitation) Our neuropsychologists assess and prepare academic (and other) recommendations based on neuropsychological testing.◦Can also represent students at IEP
meetings (through phone conference).
School ServicesStudents with Epilepsy may be
entitled to a 504 Plan or an IEP504 Plans
◦Section 504 of the Rehabilitation Act: No one with a disability can be excluded from a federally funded program
◦E.g., use of tape recorder, ramp, extra set of textbooks
School ServicesIEP
◦ A small subset of disabled students qualify for this program
◦ More stringent criteria than a 504◦ Involves significant remediation and assistance to
allow education to occur◦ Parent or teacher can request an evaluation of
child in order to determine eligibility◦ Often an independent neuropsychologist will be
part of the process (sometimes paid by school) Language must be respected in testing process
◦ Reviewed and updated yearly◦ Recent Blog Post: www.navigatingepilepsy.com
School ServicesNEREG/Life Links offers TWO Scholarship
Programs: ◦Summer camp scholarship for children 8-18
2012 = nine $250/child scholarships◦College/Trade School, Continuing Education
scholarship for adults 2012 = five $1,000/scholarships
◦For more info or for an application (January 2013): http://
epilepsylifelinks.com/scholarship-children-adults.php Or, contact me at 212-661-7460, option 5 or
Support GroupsThe importance of social
activities as part of a comprehensive epilepsy treatment approach.
There groups are free, open to the public and for patients, family and caregivers alike.
Support GroupsNew York Groups:
◦Middletown Office: 2nd Tues; 6-7 pm◦Staten Island: 3rd Mon; 6-7pm◦White Plains Hospital: 1st Thurs; 6:30-
7:30 pm◦Manhattan: 1st Mon; 6-7pm◦Manhattan Spanish Group: 2nd Mon;
6-7 pm
Support GroupsNew Jersey Groups:
◦Jersey City Medical Center: 1st Tues; 6-7pm
◦Hackensack Hospital: 3rd Thurs; 6:30-7:30 pm
◦Hackensack Spanish Group: 2nd Thur; 6:30-7:30 pm
Psychological helpIndividual and group
psychotherapy for patients with a diagnosis of epilepsy (Manhattan, Middletown and White Plains, NY and Hackensack and Summit, NJ)
Walks & FundraisersNEREG/Life Links is active throughout the year,
attending various walks and fundraisers. We invite you to join our team and attend events with the doctors and fellow patients
National Walk for Epilepsy◦ April 2013 Washington DC◦ Transportation Funds provided by NEREG will be
available through several Epilepsy Foundations We also attend walks every year in:
◦ Northeast NY◦ The shore, NJ◦ Edison, NJ◦ Connecticut
Wellness Programs 2012Yoga: free classes in our
Manhattan officePurple knitting club: White Plains
y Middletown, NY and Hackensack, NJ
Fun Farm Day (Alstede Farms, NJ)Purple Pumpkin Project:
Hackensack y Summit, NJ and Middletown, NY
Volunteer activities
Wellness Program 2012Computer classes 101: White Plains,
NY y Hackensack, NJEpilepsy Spoken Word: for teens and
young adults who write or listen to poetry and have epilepsy. Manhattan, NY
On-line book Club (on-line or telephone).
Art class (Manhattan) y Illuminations
Referral serviceCase by case, specific referrals
may be needed.Database of services
Other Referrals & ResourcesDisability Attorney Referrals
◦Epilepsy Legal Defense Fund (EF)◦http://www.epilepsyfoundation.org/re
sources/epilepsy/index.cfm/ NYC Early Intervention Program
◦Call 311 for centers your borough, or visit
◦General Info: http://www.nyc.gov/html/doh/html/earlyint/earlyint.shtml
Other Referrals & Resources: Food and TransportationTransportation Services:
◦http://www.nyc.gov/html/doh/dowloads/pdf/earlyint/earlydirectory-trans.pdf
◦USA Public Transportation by State: http://www.epilepsylifelinks.com/epilepsy-
medications-assistance.phpRespite Care in NYC:
◦http://www.nyc.gov/html/doh/downloads/pdf/earlyint/earlydirectory-respite.pdf
Other Referrals & Resources: MedicationsPrescription Assistance Programs
◦Many programs by location & medication
◦http://www.epilepsylifelinks.com/epilepsy-prescription-assistance-program.php
Discounted Generic Programs:◦http://
www.epilepsylifelinks.com/epilepsy-generic-discounts.php
Additional Prescription Programs:◦http://www.epilepsylifelinks.com/epilep
sy-medications-assistance.php
Other Referrals & Resources: MedicationsPregnancy Registries:
◦http://www.aedpregnancyregistry.org◦(888)233-2334◦Lamotrigine (Lamictal) Pregnancy
Registry (800) 336-2176 ◦Levetiracetam (Keppra) Pregnancy
Registry (888) 537-7734
Agencies & AssociationsEpilepsy Foundation of America
◦http://www.epilepsyfoundation.org/Dravet Foundation
◦http://www.dravetfoundation.org/Tuberous Sclerosis Alliance
◦http://www.tsalliance.org/Intractable Childhood Epilepsy Alliance
◦http://www.ice-epilepsy.org/Brain Injury Association of America
◦http://www.biausa.org/
Agencies & AssociationsAutism Speaks
◦http://www.autismspeaks.org/Epilepsy Society of Southern NY
◦http://www.essny.org/Lenox Gastaut Foundation
◦http://www.lgsfoundation.org/Seizure Tracker
◦https://www.seizuretracker.com/
Stay Connected!Quarterly Newsletter to stay
informed◦Sign up to receive it electronically
Blogs:◦www.NavigatingEpilepsy.Com◦http://www.epilepsymemory.com/
Facebook: Epilepsy Life LinksEpilepsia en Latino AmericaTwitter: EpilepsyLL
Purple is the color for epilepsyNovember: National epilepsy
awareness monthPurple: International epilepsy
colorMarch 26: International Day of
Epilepsy–Purple Day
What is 2013 bringing?Conferences y webinarsEpilepsy WalksSupport GroupsYoga/pilates/taekwondo and self
defensePurple knitting club/needlepointComputer classes, Purple Pumpkin,
Farm trips in NY and NJSpa treatments/diet consultsMedication assistance?
Thank you!Be well and stay in touch